Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Is it worth getting tested?

Tbetteridge

Recommended Posts

Tbetteridge Newbie
Tbetteridge
Posted

I know I react to gluten. Severely. Is it worth getting tested and having to go back to eating gluten?  I accidently consumed something last night and now i feel as though I am dying. That was one tiny item!  I can't imagine purposefully eating gluten for several weeks for a blood test and biopsy. 

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Fundog Enthusiast
Fundog
Posted

I feel your pain.  Literally, I do.  It all comes down to us each as individuals.  I get "The Rash" and after both blood test and the skin biopsy came out negative, the next step would have been endoscopy.  But I have been fantasizing about a wall "mural" made of sandpaper for 16 years, and had already given myself cellulitis.  Could I stand to go back to eating gluten for three months?  Unthinkable!  So all I know is, gluten makes me want to skin myself alive.  And I'm not alone.  There are several on here who are undiagnosed or self diagnosed.  Good luck in whatever you decide. :)

Tbetteridge Newbie
Tbetteridge
Posted
  • Author

I'm thinking it won't change my lifestyle, I already avoid gluten like the plague. Two of my children are gluten intolerant as well as have other food allergies. So I know what to look for. For me it came on within the last 6 months. My whole house is now gluten-free, even my husband is on board as he sees how much more pain this causes me. (It doesn't cause my children nearly the pain/symptoms that I get, which is why I think I have celiac vs an intolerance). 

cyclinglady Grand Master
cyclinglady
Posted

Only you can decide if it is worth getting an official diagnosis.  

I can tell you that I am officially diagnosed (3 years).   Just a lucky catch during my GI consult for a routine colonoscopy (Yep, am over 50).  Anemia was my only known symptom.  No tummy issues.  My hubby went gluten-free 15 years ago when my allergist and his GP suggested going gluten free.  It worked.  The first year was a struggle of doubt and cheating on the diet though.  He would be the first to tell you that I have had it easier from family, friends , and medical regarding support.  Will he do a gluten challenge?  No.  He is thankful for my diagnosis.  Now, our daughter gets tested every few years and her doctor does not hesitate to check.  celiac disease is genetic.  It can be symptom free. It can cause unknown damage (I have had fractures from osteoporosis.)  Accommodations from schools (even university dorms), is necessary and a diagnosis paves the way.  

Again, it is a individualized decision.  I wish you well.  

cstark Enthusiast
cstark
Posted
12 hours ago, Tbetteridge said:

I know I react to gluten. Severely. Is it worth getting tested and having to go back to eating gluten?  I accidently consumed something last night and now i feel as though I am dying. That was one tiny item!  I can't imagine purposefully eating gluten for several weeks for a blood test and biopsy. 

I am right with you.  I had the blood test and found the intolerance.  However, if I do go for the biopsy (don't think I will), I would have to be on gluten and that sends my body completely out of whack.  I don't have "the rash" of GI issues, but I do experience the neurological side of consuming gluten.  Not fun by any sort of the imagination!

Tbetteridge Newbie
Tbetteridge
Posted
  • Author

My husband wants me to get tested but I am not sure I can go back to that hell.  It is even worse now that I have been off gluten for 3 months.  The cross contamination I had the other night was enough to make me think I was dying.  I pretty much was living in the bathroom for 24 hours and then the gas, bloating, and burping continues for another 24 hours after that,  Who knows what it is actually doing to my intestines!

cstark Enthusiast
cstark
Posted
18 minutes ago, Tbetteridge said:

My husband wants me to get tested but I am not sure I can go back to that hell.  It is even worse now that I have been off gluten for 3 months.  The cross contamination I had the other night was enough to make me think I was dying.  I pretty much was living in the bathroom for 24 hours and then the gas, bloating, and burping continues for another 24 hours after that,  Who knows what it is actually doing to my intestines!

When you go off gluten and then accidentally get cross-contaminants, your body will go into hyper drive to get the poison out of system because it was starting to get used to operating without the gluten.  It stinks during the reaction time, yes, but hang in there. :) 

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


mama.liz07 Apprentice
mama.liz07
Posted

I'm essentially in the same situation you are, except my blood test came back negative.  I don't think I need the definitive diagnosis to eat like I have celiac (i.e. be really careful and not cheat).  I have two family members with celiac (one with a negative blood test too) and when I went off gluten I felt better than I've felt in years...and then when I ate gluten recently I felt awful again (still do).  My body does not like gluten and I likely have the gene for celiac disease.  I could even get tested for the gene which wouldn't require going back on gluten.  Positive gene, body hates gluten...that'd be enough for me.  But, if you need a more definitive, standard diagnosis I guess you do what you have to do.  Every situation is different.   Hope you feel better soon!  :-)

Tbetteridge Newbie
Tbetteridge
Posted
  • Author

I have had dna gene testing done, for other reasons and I have both genetic markers for celiac!

cashs mom Rookie
cashs mom
Posted

I went gluten free a year ago to see if it helped with some of the issues I'd been having.  It did help with some, not so much with others.  But overall, I think I'm doing much better without gluten.  It's a personal decision but I've decided not to go back on gluten to have the blood tests done.  There is no cure or treatment other than what I am doing now so I don't see the point of putting myself and my husband thru the misery of going back on gluten just to get a diagnoses.  But as I said, its a personal decision.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Scott Adams
      0

      When Gluten-Free Food Is Unavailable: A Child's Struggle Highlights the Hidden Risks for People with Celiac Disease

    2. Churley
      - Churley replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      10

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Have you tried Pure Encapsulations supplements? This is a brand my doctor recommends for me. I have no issues with this brand.
    3. asaT
      - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      48

      Supplements for those Diagnosed with Celiac Disease

      plant sources of calcium, such as spinach, have calcium bound to oxalates, which is not good. best source of calcium is unfortunately dairy, do you tolerate dairy? fermented dairy like kefir is good and or a little hard cheese. i do eat dairy, i can only take so much dietary restriction and gluten is hard enough! but i guess some people do have bad reactions...
    4. asaT
      - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      48

      Supplements for those Diagnosed with Celiac Disease

      i take b12, folate, b2, b6, glycine, Nac, zinc, vk2 mk4, magnesium, coq10, pqq, tmg, creatine, omega 3, molybdnem (sp) and just started vit d. quite a list i know. I have high homocysteine (last checked it was 19, but is always high and i finally decided to do something about it) and very low vitamin d, 10. have been opposed to this supp in the past...
    5. nanny marley
      - nanny marley replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      20

      Insomnia help

      Great advise there I agree with the aniexty part, and the aura migraine has I suffer both, I've also read some great books that have helped I'm going too look the one you mentioned up too thankyou for that, I find a camomile tea just a small one and a gentle wind down before bed has helped me too, I suffer from restless leg syndrome and nerve pain hence I...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,348
    • Most Online (within 30 mins)
      7,748
    jimiiiii
    Newest Member
    jimiiiii
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Churley
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Churley · Posted

      Have you tried Pure Encapsulations supplements? This is a brand my doctor recommends for me. I have no issues with this brand.
    • asaT
      Supplements for those Diagnosed with Celiac Disease

      By asaT · Posted

      plant sources of calcium, such as spinach, have calcium bound to oxalates, which is not good. best source of calcium is unfortunately dairy, do you tolerate dairy? fermented dairy like kefir is good and or a little hard cheese. i do eat dairy, i can only take so much dietary restriction and gluten is hard enough! but i guess some people do have bad reactions to it, so different for everyone.  
    • asaT
      Supplements for those Diagnosed with Celiac Disease

      By asaT · Posted

      i take b12, folate, b2, b6, glycine, Nac, zinc, vk2 mk4, magnesium, coq10, pqq, tmg, creatine, omega 3, molybdnem (sp) and just started vit d. quite a list i know.  I have high homocysteine (last checked it was 19, but is always high and i finally decided to do something about it) and very low vitamin d, 10. have been opposed to this supp in the past, but going to try it at 5k units a day. having a pth test on friday, which is suspect will be high. my homocysteine has come down to around 9 with 3 weeks of these supplements and expect it to go down further. i also started on estrogen/progesterone. I have osteoporosis too, so that is why the hormones.  anyway, i think all celiacs should have homocysteine checked and treated if needed (easy enough with b vit, tmg). homocysteine very bad thing to be high for a whole host of reasons. all the bad ones, heart attack , stroke, alzi, cancer..... one of the most annoying things about celiacs (and there are so many!) is the weight gain. i guess i stayed thin all those years being undiagnosed because i was under absorbing everything including calories. going gluten-free and the weight gain has been terrible, 30#, but i'm sure a lot more went into that (hip replacement - and years of hip pain leading to inactivity when i was previously very active, probably all related to celiacs, menopause) yada yada. i seemed to lose appetite control, like there was low glp, or leptin or whatever all those hormones are that tell you that you are full and to stop eating. my appetite is immense and i'm never full. i guess decades or more ( i think i have had celiacs since at least my teens - was hospitalized for abdominal pain and diarrhea for which spastic colon was eventually diagnosed and had many episodes of diarrhea/abdominal pain through my 20's. but that symptom seemed to go away and i related it to dairy much more so than gluten. Also my growth was stunted, i'm the only shorty in my family. anyway, decades of malabsorption and maldigestion led to constant hunger, at least thats my theory. then when i started absorbing normally, wham!! FAT!!!    
    • nanny marley
      Insomnia help

      By nanny marley · Posted

      Great advise there I agree with the aniexty part, and the aura migraine has I suffer both, I've also read some great books that have helped I'm going too look the one you mentioned up too thankyou for that, I find a camomile tea just a small one and a gentle wind down before bed has helped me too, I suffer from restless leg syndrome and nerve pain hence I don't always sleep well at the best of times , racing mind catches up I have decorated my whole house in one night in my mind before 🤣 diet changes mindset really help , although I have to say it never just disappears, I find once I came to terms with who I am I managed a lot better  , a misconception is for many to change , that means to heal but that's not always the case , understanding and finding your coping mechanisms are vital tools , it's more productive to find that because there is no failure then no pressure to become something else , it's ok to be sad it's ok to not sleep , it's ok to worry , just try to see it has a journey not a task 🤗
    • nanny marley
      nothing has changed

      By nanny marley · Posted

      I agree there I've tryed this myself to prove I can't eat gluten or lactose and it sets me back for about a month till I have to go back to being very strict to settle again 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.